Arikayce vs Amikacin

Posted by marmee26 @marmee26, Sep 16 8:43am

Hi All, I’m fairly new to this group and appreciate any insight offered. I also recognize that everyone responds to therapy differently. That being said, my co-pay for Arikayce is very steep. The prescribing physician has offered Amikacin in lieu of Arikayce. I am aware that these two vary in how the body processes them. Question- has anyone in this group recovered fully from MAC on Amikacin? Any insight is appreciated. Thank you in advance.

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@harrynsc

Robin,
Which Part D plan do you have?
Thanks,
Harry

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Part D is included in my supplement plan which is the SC state retirees plan.

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@marmee26

Thank you @mjb24. My doctor offered IV Amikacin today at my appointment. We are considering our options… yes, it does seem rather unfair- especially because choosing the government insurance is required once a person turns 65. Failure to do so will result in being financially penalized. The private insurance I had prior to age 65 was very good. Oh well.. I remain grateful for so many other things, I’ll choose to focus on those. Be well.

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I talked to my Arikayce coordinator today and there is another patient assistance program to help with co-pays if you are on Medicare or another federal insurance. She told me that most people are covered one way or another. Just wanted to share that update.

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@mjb24

I talked to my Arikayce coordinator today and there is another patient assistance program to help with co-pays if you are on Medicare or another federal insurance. She told me that most people are covered one way or another. Just wanted to share that update.

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Thanks Mary

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Here is the medicare extra help info. What hasn't been made widely known is they removed the asset cap about 2 years ago so a lot of people who weren't eligible are eligible now.
https://www.ssa.gov/medicare/part-d-extra-help

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@lilianna

I was on IV amikacin for four months after I got a bad reaction to rifabutin ( high liver enzymes) . I had it 3 times a week and was going to the infusion place. I had a port( a PEP line I think it’s called which was put in the hospital setting) in my arm and it was very convenient except I got allergic to the dressing that covered the port. Otherwise I felt stronger. True for about 2 hours after the infusion I was tired and I believe I lost some hair but It helped me a lot and I believe that was the time I converted to being MAC negative. The only thing to remember is please make sure they check you kidney and liver function- it was done once a week. This was my experience. Good luck to you. If your blood work is fine you should be all right.

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